AB1601 PATIENT EXPERT RECOMMENDATIONS ON WAYS TO IMPROVING THE SYSTEMIC SCLEROSIS CARE CONTINUUM ACROSS EUROPE
Authors: I. Galetti, S. Farrington, Y. Allanore, M. Matucci-Cerinic, S. Sandulescu, R. Schriemer, C. P. Denton
Journal: Annals of the Rheumatic Diseases (2023)

<h3>Background</h3> Systemic sclerosis (SSc), also known as scleroderma, is a rare autoimmune disease that stiffens the skin, turning simple daily activities into real challenges for patients. It can affect all organs, and while treatments exist, there is currently no cure. The disease is relatively invisible among general practitioners and policymakers in Europe - meaning hundreds of people affected by this rare condition remain undiagnosed and untreated. Federation of European Scleroderma Associations (FESCA) took a two-pronged approach to develop new evidence. June 2022 a Position Paper (PP) based on a literature review and a survey for healthcare providers (HCP) was published, followed by a large-scale patient and carer survey, whose results are expected in June 2023. <h3>Objectives:</h3> Highlight the unmet needs of SSc patients throughout the care pathway. Investigate the health and socio-economic burden of the SSc Provide evidence to policy stakeholders on the need for policy actions to address health inequalities. <h3>Methods</h3> For the PP, a total of 15 publications were reviewed. To fill the knowledge gaps identified by the literature review, FESCA developed a survey questionnaire earmarked for Excellence or Reference Centers that work with FESCA member organizations and/or are part of the European Scleroderma Trials and Research group (EUSTAR). Upon validation by the authors, the survey was completed by 78 respondents from 24 countries. The upcoming survey will be distributed across 20 countries, a min. representative sample of 511 patients and 170 carers will provide new insights. <h3>Results</h3> The PP highlighted need for policy action in five action areas to ensure timely treatment initiation for all eligible patients and improved health outcomes and quality of life for people living with SSc, by: 1. Creating patient registries for SSc; 2. Shortening time to accurate diagnosis through expanded HCPs curricula; 3. Ensuring timelier referral of patients to specialized care; 4. Improving treatment recommendations and access to appropriate medicines through fast track pathways; 5. Delivering better quality information to SSc patients. The survey should provide information on patients' evaluations of physical functioning and overall health as the main factors in the decision-making process and the assessment of a treatment's success, showing the inadequacy of current value attribution and appraisal frameworks. Preliminary results are expected to be published at the EULAR Congress. <h3>Conclusion</h3> The outcomes of the work done by FESCA aims at improving the SSc continuum of care from earlier diagnosis to better treatments as well as creating greater awareness of scleroderma so that those who suffer from it can access proper, equitable care. Most importantly, the results of both studies highlight the need for developing person-centred care pathways integrating more systematically quality-of-life considerations in healthcare and treatment decisions as well as in value attribution frameworks that are more responsive to patient needs. <h3>References</h3> <b>[1] Orphanet, Systemic Sclerosis, Disease definition.</b> shorturl.at/CTVY2 EURORDIS, Rare 2030 Recommendations from the Rare 2030 Foresight Study. Feb. 2021 shorturl.at/amnoP. <b>[2] Living with systemic sclerosis: the point of view of patients, Current Medical Research and Opinion.</b> Galetti I, 37:sup2, 1-4, 2021. <b>[3] Factors influencing early referral, early diagnosis and management in patients with diffuse cutaneous systemic sclerosis.</b> Distler O, Allanore Y, Denton CP, et al. Rheumatology (Oxford). 2018;57(5):813-817. <b>[4] Identifying unmet needs in SSc-ILD by semi-qualitative in-depth interviews.</b> Anna-Maria Hoffmann-Vold et al., Rheumatology, Volume 60, Issue 12, December 2021, Pages 5601–5609. <b>[5] How do patients with systemic sclerosis experience currently provided healthcare and how should we measure its quality?</b> Julia Spierings et al for the ARCH Study Group, Rheumatology, Volume 59, Issue 6, June 2020, Pages 1226–1232. <b>[6] Identifying unmet needs in SSc-ILD in 8 European countries.</b> Hoffmann-Vold A-M et al. <h3>Acknowledgements</h3> We thank FESCA members for collecting first hand patient and caregiver answers. We would also like to thank Michael Hugues, Monica Holmer, Oliver Distler., Voon Ong, Rita Schrimer for their counsel in developing the questionnaire. In addition, a big thank you to specialized centers for their support and our sponsors: Janssen Global and Boehringer Ingelheim. Special mention to Weber Shandwick for their support in this project. <h3>Disclosure of Interests</h3> Ilaria Galetti Grant/research support from: We were supported by Jansen and Boehringer Ingelheim., Sue Farrington Grant/research support from: We were supported by Jansen and Boehringer Ingelheim., Yannick Allanore Grant/research support from: We were supported by Jansen and Boehringer Ingelheim., Marco Matucci-Cerinic Grant/research support from: We were supported by Jansen and Boehringer Ingelheim., Silvia Sandulescu Grant/research support from: We were supported by Jansen and Boehringer Ingelheim., Rita Schriemer Grant/research support from: We were supported by Jansen and Boehringer Ingelheim., Christopher P Denton Grant/research support from: We were supported by Jansen and Boehringer Ingelheim.